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Citation for final published version:
Lau, Boon Yen, Leong, Ruth, Uljarevic, Mirko, Lerh, Jian Wei, Rodgers, Jacqui, Hollocks,
Matthew J., South, Mikle, McConachie, Helen, Ozsivadjian, Ann, Van Hecke, Amy, Libove, Robin,
Hardan, Antonio, Leekam, Susan, Simonoff, Emily and Magiati, Iliana 2019. Anxiety in young
people with Autism Spectrum Disorder (ASD): Common and ASD-related anxiety experiences, and
their associations with individual characteristics. Autism file
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Anxiety in Young People with Autism Spectrum Disorder (ASD):
Common and ASD-Related Anxiety Experiences, and their Associations
with Individual Characteristics
Final Author Names Listed (in order of authorship with and without qualifications) LAU, Boon Yen1, BSocSc; LEONG, Ruth1, BSocSci; ULJAREVIC, Mirko2; LERH, Jian
Wei1, BSocSci; RODGERS, Jacqui3, Ph.D.; HOLLOCKS, Matthew J.4,5, D.Clin.Psy,
Ph.D.; SOUTH, Mikle6, Ph.D.; McCONACHIE, Helen7, Ph.D.; OZSIVADJIAN, Ann8,
D.Clin.Psy; VAN HECKE, Amy9, Ph.D, LIBOVE, Robin2, B.S.; HARDAN, Antonio2,
M.D.; LEEKAM, Susan10, Ph.D.; SIMONOFF, Emily2, MD, FRCPsych; & MAGIATI,
Iliana1 Ph.D., D.Clin,Psy.
(underlined are the authors’ last names) Authors’ Professional Affiliations 1 Department of Psychology, National University of Singapore, 9 Arts Link, Singapore 117570, Singapore; 2 Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford University, Stanford, CA 94305, USA 3 Clinical Psychology, Institute of Neuroscience, Newcastle University, Sir James Spence Institute level 3, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne; NE1 4LP, UK 4 Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology & Neuroscience, King's College London, De Crespigny Park, Denmark Hill, London, SE5 8AF, UK; 5 The Child Development Centre, Hillingdon Hospital, Central & North West London NHS Foundation Trust, London, UB8 3NN, UK. 6Department of Psychology, College of Family, Home and Social Sciences, Brigham Young University, Provo, USA; 7 Institute of Health and Society, Newcastle University, Sir James Spence Institute level 3, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne; NE1 4LP, UK 8 Evelina London Children’s Hospital, Guys and St Thomas’ NHS foundation trust, UK 9 Department of Psychology, College of Arts and Sciences, Marquette University, Cramer Hall, Milwaukee, WI 53201-1881, USA.10 Wales Autism Research Centre, School of Psychology, Cardiff University, Cardiff, CF10
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Abstract
Anxiety is common in Autism Spectrum Disorder (ASD). Many anxiety symptoms in
ASD are consistent with DSM-5 anxiety disorders (termed “common” anxieties), but
some may also be qualitatively different, likely relating to ASD traits (herein termed
“ASD-related” anxieties). To date, few studies have examined both “common” and
“ASD-related” anxiety experiences in ASD. We explored caregiver-reported Spence
Children’s Anxiety Scale-Parent version (SCAS-P) data from a multi-site (UK, Singapore
& USA) pooled database of 870 6-18-year old participants with ASD, of whom 287
provided at least one written response to the optional open-ended SCAS-P item 39 (“Is
there anything else your child is afraid of?”). Responses were thematically coded to
explore (i) common and ASD-related anxiety presentations; and (ii) their relationship
with young people’s characteristics. Nearly half of the responses were ASD-related
anxieties (mostly sensory, uncommon or idiosyncratic specific phobias and worries about
change and unpredictability). The other half described additional common anxieties not
covered in the original measure (mostly social, weather and environmental disasters, and
animals). Caregivers of participants who were more severely affected by ASD symptoms
reported more ASD-related, as compared to common, additional anxieties. Implications
for the assessment and understanding of anxiety in ASD are discussed.
Keywords: Autism Spectrum Disorder, anxiety, young people, children,
comorbidity, phenomenology, presentation, assessment, measurement.
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Lay Abstract
Many autistic young people and adults experience anxiety. Some of the things that make
autistic people anxious are also experienced by many non-autistic people (we call these
common/ shared anxieties), while some experiences may be more common in autistic and
less common in non-autistic people (we call these ASD-related anxieties). Most research
so far has used existing measures of anxiety developed for non-autistic people to measure
autistic people’s anxiety, but much less is known about the more ASD-related anxiety
experiences of young people on the spectrum. In this study, we wanted to find out what
were the different types of common but also ASD-related anxieties that caregivers
reported their autistic children experienced. We used a question in the Spence Children’s
Anxiety Scale-Parent version (SCAS-P) which asks “Is there anything else your child is
afraid of?”. We pooled together all the responses from caregivers of 870 6-18-year old
young autistic people from three countries (UK, USA and Singapore), of whom 287
provided at least one written response to this question. We then organized their responses
into common and more ASD-related anxiety presentations: we found that about half were
ASD-related (these were sensory; some less common specific fears; and worries about
change and unpredictability), and the other half were common anxieties (mostly social
worries, anxiety about the weather, environmental disasters, and animals). We discuss
how these findings could help better identify anxiety in autistic young people and provide
more ASD-informed supports.
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Introduction
High rates of clinically elevated anxiety, anxiety disorders and/or idiosyncratic
fears in autism spectrum disorder (ASD) have been recognized since the original clinical
descriptions of autism (Kanner, 1943), as well as been consistently reported in recent
systematic reviews and meta-analyses in both young autistic people (rates of 30-50%;
van Steensel et al., 2011; White, Oswald, Ollendick, & Scahill, 2009) and adults (rates of
40-50%; Buck et al., 2014; for a review see Kent & Simonoff, 2017), as compared to 3-
5% in the general population (Bitsko et al., 2018).
Given the high anxiety rates and considerable clinical impact (i.e. Kerns et al.,
2015), increasing research efforts have been invested in better understanding the factors
and mechanisms implicated in anxiety in ASD (i.e. Rodgers & Ofield, 2018; South &
Rodgers, 2017; Vasa et al., 2018; White et al., 2015; Wood & Gadow, 2010; Kerns &
Kendall, 2012). Yet, in order to be able to identify anxiety risk and protective correlates
and mechanisms, it is first necessary to understand and better characterize and assess the
way anxiety is experienced and presents in this population.
The psychometric properties of common anxiety assessments developed for the
general child population1 when used with autistic children and adolescents have only
recently started to be examined (i.e., Kerns et al., 2015; White et al., 2015; Zainal et al.,
2014; Magiati et al., 2017; Jitlina et al., 2017; Glod et al, 2017; for earlier reviews, see
Lecavalier et al., 2014; Wigham & McConachie, 2014). Clinical experience and findings
from these studies highlight several complications in their use. Firstly, individuals on the
spectrum may respond more intensely, aversively or persistently towards stimuli that
appear seemingly harmless or minor to most others without ASD (e.g., Evans, Canavera,
1 Commonly employed tools for the general population with good psychometric properties include the Anxiety Disorders Interview Schedule - Children and Parent versions (ADIS-IV; Silverman & Albano, 1996); the Multidimensional Anxiety Scale for Children (MASC; March, 1997); the Spence’s Children Anxiety Scale - Children and Parent versions (SCAS; Spence, 1997), and others.
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Kleinpeter, Maccubbin, & Taga, 2005; Mayes & Calboun, 1999; Mayes et al., 2013).
Secondly, young people with ASD, particularly those with intellectual or verbal
impairments, may also struggle with reporting their anxieties, may express these in less
neurotypical or conventional ways, or may find it difficult to verbally articulate their
worries, all of which make it difficult for them or their informants to accurately report
anxiety (Glod et al., 2017; Hallett et al., 2013). Thirdly, there is overlap between the
behavioral symptoms of ASD and symptoms commonly associated with mood and
anxiety problems (i.e. Spain et al., 2018; South et al., 2017). Fourthly, factor structures of
existing informant-based anxiety measures are generally poorly replicated in ASD
samples, suggesting that the measures do not entirely capture the experience of anxiety in
ASD (i.e. Glod et al., 2017; Magiati et al., 2017; White et al., 2015; Dovgan et al., 2019).
Kerns & Kendall (2012) first theorized about the potential importance to better
disentangle common/traditional anxieties from ASD-related anxiety experiences for
better identification, diagnosis, and understanding of possible differential underlying
processes, possibly leading to more specific, targeted interventions for the ASD
population. Current emerging qualitative and quantitative empirical research points out
that autistic people often experience fears, worries, and anxieties which are common in
the general population and/or those consistent with DSM-5 anxiety disorders (thereafter
referred to as “common” anxieties), as well as anxieties which are more closely related to
their core ASD characteristics and experiences (hereafter referred to as “ASD-related”
anxieties; e.g., Kerns & Kendall, 2012; Mayes et al., 2013; Bearss et al., 2016;
Ozsivadjian, Knott, & Magiati, 2012; Trembath, Germano, Johanson, & Dissanayake,
2012).
“Common” DSM-5 anxiety symptoms and disorders in ASD: the evidence to date
In a recent review of twelve studies investigating rates of DSM anxiety disorders in
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a total of more than 1,200 children, adolescents and adults with ASD using clinical
diagnostic interviews only (not screening/informant measures), Kent & Simonoff (2017)
reported a prevalence rate of any anxiety disorder of around 50%, with large variability
between the different studies, depending on the specific clinical interview used and
sample characteristics. The most common anxiety disorders were specific phobias (31-
67%), followed by social anxiety (4-29%) and OCD (5-37%; no longer included in the
DSM-5 anxiety disorders). Generalized Anxiety Disorder (GAD) rates were also variable
(6-32%), but much higher than those in the general population and in those with
intellectual disability (ID). Separation anxiety rates and panic disorder rates were less
common. These rates were in general consistent with an earlier meta-analysis of anxiety
rates in young individuals with ASD, in which studies utilizing clinical interviews as well
as those using screening informant-based or self-report measures were included (van
Steensel et al., 2011; see also more recently van Steensel & Heeman, 2017).
With regards to specific phobias, common in childhood, fears of needles/
injections/ blood/ germs/ doctors, insects and animals were the most frequently reported
in ASD (e.g. Leyfer et al., 2006; Muris et al., 1998). Common social worries (i.e. being
socially evaluated, not meeting social or performance -related expectations, public
speaking and others) as well as common generalized worries (i.e. about school, finances,
the future, weather, natural disasters etc.) are also often identified in young people on the
spectrum (see Magiati, Ozsivadjian & Kerns, 2017 for a review).
ASD-related anxieties
Idiosyncratic specific phobias (SPs). When participants are explicitly invited to
identify other specific fears and phobias not included in the DSM or in DSM-derived
traditional clinical measures, idiosyncratic or uncommon SPs (e.g. fears of chocolate
buttons, men with beards, toilets, fears of specific foods) are more frequently reported in
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ASD compared to non-ASD samples (Evans et al., 2005; Gjevik et al., 2011; Witwer &
Lecavalier, 2010). Moreover, Kerns et al. (2014) found that children with ASD
sometimes show anxious anticipation and reactions towards stimuli that are generally
considered enjoyable in childhood (e.g., happy birthday song, bubbles, Christmas), which
may be at least partially driven by sensory or social issues or by difficulties with changes
in routine (for more on this see next section).
Sensory-related anxieties. ASD-related sensory hypersensitivity and associated
sensory processing difficulties are consistently associated with elevated anxiety (Ben-
Sasson et al., 2008; Lidstone et al., 2014; Wigham et al., 2015). Individuals with ASD
with moderate to severe sensory symptoms also have significantly higher anxiety scores
compared to those with less severe sensory issues (Sasson, Turner-Brown, Holtzclaw,
Lam, & Bodfish, 2008; Uljarevic, Carrington, & Leekam, 2016). Some of the uncommon
or idiosyncratic specific phobias reported in individuals with ASD discussed above may
likely stem from sensory sensitivities, which in turn may be exacerbated in situations of
uncertainty, such as change, transition or overload.
Anxiety about uncertainty, change, uncertainty and novelty. 22% of the 59 7–
17 year old individuals with ASD in Kerns et al. (2014) presented with anxiety
specifically related to changes in daily routines or routes. Rodgers et al. (2016) proposed
that many individuals with ASD experience intolerance of uncertainty (also a common
factor implicated in anxiety, and specifically GAD, in the general population), and that
therefore insistence on sameness and ASD-related repetitive behaviors may serve to
impose predictability and to help cope with anxieties associated with change, novelty or
uncertainty (Boulter, Freeston, South, & Rodgers, 2014; Chamberlain et al., 2013;
Gotham et al., 2013; Uljarevic et al., 2017).
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The present study: rationale, aims and research questions
Currently, existing anxiety measures mostly do not enquire about ASD-related
experiences and/or expressions of anxiety in ASD (Kerns & Kendall, 2012; Wood &
Gadow, 2010). Proposed adaptations/addenda and new measures deriving from, or
extending, existing anxiety measures to include scale items that are more relevant to and
applicable for the ASD population are being developed (i.e. Bearrs et al., 2016) or have
recently been developed (Kerns et al., 2016; 2017; Rodgers et al., 2016; Scahill et al.,
2019), show preliminary evidence of good to excellent psychometric properties, but these
have only just recently begun to be used or investigated more widely.
A small number of focus groups (Bearss et al., 2016; Ozsivadjian, Knott, &
Magiati, 2012; Trembath et al., 2012) and clinical interview studies (Kerns et al., 2014;
Leyfer et al., 2006; Pearson et al., 2006) have provided valuable data to date in
disentangling anxiety symptoms commonly present in the general population from ASD-
related anxiety presentations and experiences (e.g. Renno & Wood, 2013; White, Bray, &
Ollendick, 2012; Keen et al., 2017).
Furthermore, Kerns et al. (2014) and Ollendick and White (2013) remain, to our
knowledge, the only research studies to date to investigate possible associations between
child characteristics and common versus ASD-related anxiety experiences and
symptomatology. Kerns and colleagues found that higher ASD symptom severity and
more anxious cognitive styles were more predictive of ASD-related anxieties, whilst
higher anxious cognitive style, better language ability, and higher sensory sensitivity and
avoidance were more predictive of common (DSM-related) anxieties. Ollendick & White
(2013) reported common in both children with and without ASD anxiety-related
processes of negative biases, unhelpful automatic thoughts and physiological arousal,
while social confusion, alexithymia, sensory sensitivities and insistence on sameness
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were more unique to anxiety in the ASD group.
Adopting a different methodology (analyzing informants’ written responses to an
open-ended anxiety item of an existing anxiety measure) and attempting to replicate and
extend existing findings in the literature with a much larger international pooled sample,
the present study aimed to:
(a) Systematically code, organize, categorize, and describe the range of anxiety
presentations which were qualitatively different from the common DSM-related anxiety
symptoms reported by caregivers in response to an open-ended anxiety questionnaire
item of the Spence Children’s Anxiety Scale (SCAS-Parent version); and
(b) Explore whether individual child characteristics (gender, age, intellectual and/
or adaptive functioning, and autism symptom severity) may be differentially associated
with common versus ASD-related anxiety symptoms.
Methods
Participants
Inclusion criteria. Children were included in the pooled database if they: (a) were
6–18 years old; and (b) had a professional/clinical diagnosis of ASD, Autism, Autistic
Disorder, Asperger syndrome or PDD-NOS2 provided by a qualified mental health or
medical professional using the Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV-TR or DSM-5) or the International Classification of Diseases (ICD-10). Many
participants also had additional data from the Autism Diagnostic Observation Schedule
(ADOS) or from a screening autism checklist (see Measures, ASD symptomatology).
Inclusion/ exclusion criteria for each of the 13 pooled studies can be found in [name of
author removed for blind review et al., 2017]).
2 Clinical diagnoses of Autism, Autistic Disorder, Asperger’s syndrome or PDD-NOS were given as per DSM-IV-TR, as most of the participants were diagnosed before 2013 – when DSM-5 was published.
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Participant characteristics. The original pooled database from 12 studies in
three countries (Singapore, UK, USA; see [name of author removed for blind review et
al., 2017 for more details) included caregiver-reported data (74.8% mothers) from 870
participants with ASD (87.7% males; age range 5.58–18.67 years old; M = 11.60 years,
SD = 2.77 years; 83.7% reported DSM-IV-TR/ DSM-5 clinical diagnoses of Autistic
Disorder or ASD; 12.8% Asperger Syndrome; 3.7% PDD-NOS).
Of the 870 participants in the pooled database, 287 caregivers (33%) provided at
least one written response to the open-ended SCAS-P item 39 which allowed us to
examine the above research questions. These 287 respondents constituted this study’s
sample (see Table 1 for participant characteristics). The present study’s subsample was
generally representative of the full pooled database sample in terms of gender, clinical
diagnosis, autism severity; they were somewhat younger and had lower overall
functioning classification scores than the full database participants, but effect size of the
differences were small (Table 1).
INSERT TABLE 1 ABOUT HERE
Recruitment. All but 21 participants (who were a clinical sample seeking treatment
for anxiety) in the large pooled database were recruited from community settings (i.e.
special needs or mainstream schools, parent support groups, clinical referrals for ASD but
not anxiety, autism research databases, social skills groups, etc.; see name of author
removed for blind review et al., 2017).
Measures
Demographic characteristics. All 12 studies obtained information on the
children’s age, gender, and clinical diagnosis.
Intellectual/adaptive functioning. Different standardized measures3 were
3 These included the Wechsler Intelligence Scale for Children – Third Edition (Wechsler, 1991),
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employed in the different pooled studies to measure intellectual/ adaptive functioning in
many, but not all, pooled study participants. To facilitate the comparison of cognitive and
adaptive functioning data across different measures and scores, an ordinal harmonized
“approximate level of functioning” variable was created, ranging from 1 (standard score
<40) to 8 (standard score ≥ 120)4; see name of author removed for blind review et al.
(2017) for a more detailed overview of data harmonization). Autism symptom severity. Different measures of caregiver-reported autism
symptom severity5 were also used in the different studies (n=392 participants). As above
for level of functioning, autism symptom severity data from different measures were also
harmonized by dividing each participant’s total raw score by the respective scale
maximum score to derive raw scores with a 0–1 range (higher scores = more ASD
symptoms; name of author removed for blind review et al., 2017).
Anxiety.
Common anxiety. The Spence Children’s Anxiety Scale-Parent Version (SCAS-P;
Spence, 1999) is a 38-item caregiver-completed anxiety questionnaire derived from
DSM-IV-TR and developed for use with the general child/youth population. Items are
rated on a 4-point scale (“Never” to “Always”) and later re-coded from 0 to 3, with higher
scores indicating more anxiety (score range 0-114; >24 suggested clinically elevated cut-
off for the total score; normative M = 14.20, SD = 9.70; Nauta et al., 2004). SCAS-P has
Wechsler Abbreviated Scale of Intelligence (Wechsler, 1999), Stanford Binet Intelligence Scales – Fifth Edition (Roid, 2003), Kaufman Brief Intelligence Test – Second Edition (Kaufman & Kaufman, 2005), or the Scales of Independent Behavior – Revised Short Form (Bruininks et al., 1996). 4 8 = standard score ≥ 120 (superior); 7 = 110-119 (high average); 6 = 90 – 109 (average); 5
= 80-89 (low average); 4 = 70-79 (borderline); 3 = 55-69 (mild ID); 2 = 40-54 (moderate ID);
1= <40 (severe or profound ID). These categories were based on Weschler scales
classification and DSM-5 ID ranges. 5 These included the Social Responsiveness Scale (Constantino & Gruber, 2005), the 29-item Developmental Behavior Checklist (Einfeld & Tonge, 2002) Autism Screening Algorithm score (DBC-ASA), and the Social Communication Questionnaire (Rutter et al., 2003).
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six subscales: separation (6 items), social (6 items); generalized anxiety (6 items),
panic/agoraphobia (9 items), specific phobias (5 items), and obsessive compulsive
disorder (6 items). The SCAS-P has excellent convergent and divergent validity across
age, gender, and countries in the general population (Nauta et al., 2004; Zhao & Wang,
2012). Promising psychometric properties have been reported in ASD, but the factor
structure is inconsistent in different studies (Zainal et al., 2014; Magiati et al., 2017;
Jitlina et al., 2017; Glod et al., 2017).
ASD-related anxiety. The SCAS-P includes a final open-ended question (item 39;
not included in total or subscale score calculations and optional to complete), which asks:
“Is there anything else that your child is afraid of?” - this item can be rated as “Yes” or
“No” and allows for a subsequent listing of up to three additional fears/ worries if the
informant indicates “Yes”. In order to examine less common and ASD-related anxiety
presentations, which were not included in the existing SCAS-P scale items, the first and
last authors coded and thematically organized caregivers’ responses to this additional
item (see Thematic Analysis below for more details).
Thematic Analysis
Development of coding scheme. Adapting from the thematic coding framework of
Boyatzis (1998) and Crabtree and Miller (1999) and guided by existing research literature
on both common and ASD-related anxieties (i.e. Bearss et al., 2016; Ozsivadjian et al.,
2012; Kerns et al., 2014), we initially coded the responses as (a) informants’ elaborations
to existing SCAS-P anxiety items; (b) ambiguous/ incomplete/ unclear responses which
could not be clearly organized; and (c) valid responses for further thematic analysis.
Responses from (a) and (b) were excluded from further analyses.
Responses in (c) were then further organized into ‘common’ or “ASD-related” fears
and anxieties. DSM-5 diagnostic categories for anxiety disorders and the normative
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developmental framework of common anxieties and fears in typically developing youth
(i.e. Warren & Sroufe, 2004) were used as a coding framework, but we did not develop
the coding system top-down (i.e. from the diagnostic manuals and literature). Rather, we
used our knowledge of these to organize the themes of the codes for “common/ DSM”
anxieties as derived by the participants. Responses coded as “unusual/uncommon” and/
or ASD-related due to their content, nature or focus were given ASD-related codes.
Despite having no formally established categories for fears and anxieties unique to the
ASD population, themes that have repeatedly surfaced across existing literature (see
Introduction; see also Magiati et al., 2017 for a comprehensive review) were used to
guide the way we organized caregivers’ ASD-related responses into meaningful
subthemes.
The first author pilot-tested the initial coding scheme with the first 150 responses.
Further revisions and suggestions for improvement were made by the last author to create
subthemes, which included both DSM-5 fears and anxieties (i.e., animals, social phobia,
injuries), as well as common childhood fears that are not generally included in DSM but
are well documented in the literature on children’s common fears, phobias, and worries.
The first author then proceeded to code all responses from the database using the derived
themes and subthemes (see Tables 2 and 3 for themes/ codes and subthemes/ codes). As
written responses were mostly brief without elaborations or additional explanations, we
adopted a more conservative coding approach and coded based on available information
only, as we did not want to make assumptions about the underlying nature of the reported
anxieties. For example, anxiety about “discos” most likely relates to audio or visual
sensory anxiety. However, it could also be social or relating to being in a crowd. In the
absence of any clarifications by the respondent, this was coded under specific
“uncommon” phobias, and not under sensory or social).
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Reliability. The last author then reviewed all codes to establish inter-coder
reliability (k=.88). Any disagreements were discussed until an agreement was reached.
After consensus coding of any discrepant responses between the first and last authors, a
second round of reliability was carried out to further ensure consistency in coding given
that participants’ responses were written (and thus could not be elaborated or clarified
further). In the second round, the third author blindly coded a random 10 out of every 50
responses in the database to further confirm reliability (k=.91).
INSERT TABLES 2 & 3 ABOUT HERE
Results
Data used for analyses
Of the 870 participants in the pooled database, 154 (17.7%) did not clearly
indicate yes or no to the open-ended SCAS-P item 39 question “Is there anything else
your child is afraid of?”. Of the 716 who responded either “yes” or “no” to this additional
item, 287 included at least one written response describing the type of worry/ anxiety/
fear that their children were experiencing (see Figure 1). Some participants provided only
one written response, whilst others included two or more responses. Thus, a total of 545
written responses to the optional item 39 were obtained for analyses.
INSERT FIGURE 1 ABOUT HERE
The 545 responses were first examined exhaustively and responses that merely
elaborated on or provided specific examples to existing SCAS-P items were removed
from further analyses (n=100 responses), as the focus of the study was on identifying
additional anxieties, fears or worries, not ones already mentioned in the scale;
ambiguous/ missing responses were also removed (n = 133; 24.4%). The remaining 412
valid responses (75.6% of the total responses) were then thematically organized into
themes and subthemes using the finalized coding scheme outlined earlier.
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Common and ASD-related Anxieties Reported
Common childhood fears. Of the 412 valid SCAS-P 39 responses, just over half
(220, 53.4%) were coded under “Other Common Childhood Anxieties” (symptoms and
presentations which are generally common in neurotypical 6-18 year old youth). These
included socially related fears (31.8%), common worries about being in danger (16.4%)
and weather and natural environment worries (about 11.4%; see Table 4). Amongst
socially related fears, performance and achievement-related ones were most frequently
reported, followed by worries about social relationships and fear of punishment (Table 4).
INSERT TABLE 4 ABOUT HERE
ASD-related anxieties/ worries/ fears. The remaining 192 responses (46.6%)
were coded as “ASD-related” and further organized into four main subthemes from most
to least frequent: (a) sensory, (b) specific “uncommon” phobias (SUP), (c) fears about
change/ novelty/ uncertainty, (d) anxiety relating to social/ language/ communication
demands (see Table 5).
INSERT TABLE 5 ABOUT HERE
Sensory. Auditory-related fears concerning loudness of stimuli were the most
frequent source of fear/ anxiety reported (e.g., “babies crying”, “(sound from)
hairdryer”), followed by other specific auditory input (e.g., “sounds from water pipes”)
and tactile-related sensory worries (e.g., “being touched”; see Table 5).
Specific “Uncommon” Phobias (SUP). There were four specific uncommon
phobia subthemes: (a) specific stimuli were the most frequent, followed by specific (b)
activities/events, (c) situations/places, and (d) people (see examples in Table 5). Under
(a), further subthemes were developed: (i) other objects (e.g., drainage pipes and
stickers); (ii) food (e.g., baked beans, chocolate chips), (iii) mechanical objects (e.g.,
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vacuums, washing machines), and (iv) media/ movies (e.g., specific TV advertisements;
see Discussion on sensory issues likely underlying several of these SUPs).
Association between Child Characteristics and Common versus ASD-related anxiety
reporting
For the purposes of these analyses, participants whose caregivers provided
ambiguous/ incomplete responses and those who merely elaborated on existing SCAS-P
items (n=51) were excluded. Each of the remaining 236 participants with at least one
valid/ coded response was grouped as “1” if their caregivers reported only common
additional childhood anxieties in SCAS-P open ended item 39 (102/ 236 respondents;
43.2%) or as “2” if they reported at least one ASD-related anxiety (134/236 respondents;
56.8%).
A logistic regression analysis was conducted to ascertain the role of gender, age,
overall functioning level, and autism symptom severity scores in predicting the reporting
of none versus one or more ASD-related anxieties in SCAS-P item 39 group membership.
The model was statistically significant, χ2 (4, n = 113; 98 males) = 11.03, p = .03, and
explained 12.5% (Nagelkerke R2) of the variance, correctly classifying 56.4% of the
cases. When all variables were considered together, caregivers of individuals with higher
autism symptomatology were more likely than caregivers of young people with less
severe ASD symptoms to report at least one ASD-related anxiety (see Table 6).
INSERT TABLE 6 ABOUT HERE
Discussion
This study aimed to better characterize common and ASD-related anxiety
symptoms and experiences by thematically coding caregivers’ spontaneous responses to
an open-ended SCAS-P item enquiring about additional anxieties, fears, and worries in a
large sample of youth with autism. Furthermore, we explored whether individual
17
characteristics may distinguish between those who only reported additional common,
versus those who also reported ASD-related, anxieties. Just over half of the responses to
the SCAS-P open-ended item 39 were additional anxieties commonly present in
childhood, with social worries most frequently reported. Just under half of the responses
were ASD-related, of which sensory related ones were most frequently reported,
followed by other specific uncommon phobias and worries relating to
novelty/uncertainty/change. Participants with higher ASD symptoms were more likely to
have been reported to experience at least one additional ASD-related anxiety.
The present study confirms and extends the limited, but growing, number of
largely focus group studies (see Introduction) examining emerging themes of anxiety
phenomenology in ASD. Our findings clearly support a profile of both common and
ASD-related anxieties in young autistic people as reported by their caregivers, as was
also found in Kerns et al.’s (2014) study using clinician judgment via modified clinical
interviews (see also Adams et al., 2018 who identified common and ASD-related signs of
anxiousness).
Common childhood anxieties
Among common childhood anxieties reported by caregivers in SCAS-P item 39
(N=220 responses), but which were not included in the original SCAS-P scale, social
worries were the most frequently reported common anxieties (N=70 out of 220
responses) in this population. These included being rejected, letting people down, being
different, having no friends, or being punished for getting things wrong (see Tables 2 and
3). These fears and worries are common to many young people, but are not included in
the existing SCAS-P social anxiety items. The recently developed Anxiety Scale for
Children-Autism Spectrum Disorder (ASC-ASD) by Rodgers and colleagues (2016)
does, however, include several items relating to these common social anxiety
18
experiences. For example, the ASC-ASD includes an item relating to worries about what
others think of the young person (i.e. that he/she is different) and an item relating to
worrying about making a fool of themselves in front of people. The frequency of similar,
spontaneous mentions of such fears by the caregivers in the present study provides some
validation for their inclusion in the ASC-ASD and other similar measures. Should other
existing general anxiety measures be enhanced or adapted for improved use for youths
with ASD, we recommend including more social anxiety items to evaluate several
different aspects of social worries that are commonly experienced in autistic youths. In
addition, our data also reported other worries for youth with and without ASD, especially
regarding dangerous objects or experiences (i.e. getting lost, fire) and animals, which are
not included in the SCAS-P (only insect phobias are included). Such items should also be
explicitly considered for future ASD-friendly addendum subscales of existing measures,
or explicitly enquired about in clinical questioning and interviewing.
ASD-related anxieties
With regards to ASD-related anxieties (N=192 responses), sensory-related
worries were the most commonly reported in our study (N=107 out of 192 responses;
auditory anxieties occurred most frequently, followed by tactile-related anxieties).
Specific “uncommon” phobias and worries about novelty or uncertainty made up the
remaining caregiver responses (see also Kerns et al., 2014). Several of these are included
in the ASC-ASD by Rodgers and colleagues (2016; i.e. item 5 relates to worries about
being touched; item 9 about new things, people or places; item 21 about too loud, bright
or busy places; item 23 about what will happen next or change of plans). The present
study’s findings further support the addition of such items in an anxiety measure for
youth with ASD.
19
Specific “uncommon” phobias (SUPs), which were the second most frequently
reported additional ASD-related anxiety (N=56 out of 192 responses), are not explicitly
included in the ASC-ASD or in any other anxiety measure to date. When closely
examining the caregivers’ SUP examples in the present study (see Table 3), it becomes
apparent that many of these are likely underpinned by sensory hypersensitivity and are
probably sensory in nature (i.e. auditory or visual or texture/ tactile aversive sensory
experiences associated with these specific stimuli become anxiety-provoking; examples
include vacuum cleaners, discos, specific foods, etc.). In coding these items for the
present study, however, we took a more conservative approach and coded them under
specific “uncommon” phobias and not under sensory anxieties, as there was no clear or
explicit mentioning of the sensory element of the stimuli in caregivers’ written verbatim
responses. When such screening tools are used clinically, it would be important for
clinicians to follow-up on checklist-reported information to try to further clarify the
underlying nature of several of these specific “uncommon” phobic stimuli reported.
Factors Associated with the Presence of ASD-related or Common Anxieties
Only one study to date has specifically examined predictors of common and ASD-
related anxiety symptoms (Kerns et al., 2014) and they found that autistic
symptomatology and anxious cognitive styles predicted ASD-related anxieties, while
higher anxious cognitive style, better language ability, and higher hypersensitivity were
more predictive of common (DSM-related) anxieties. Supporting Kerns and colleagues’
findings, higher autistic symptoms also predicted participants’ reporting of at least one
ASD-related anxiety group membership in the present study, suggesting that these are
more closely related to ASD experiences and symptoms than common/ DSM anxieties
and providing support for conceptualization of distinct anxiety experiences underlined by
20
different correlates, and possibly mechanisms (see Ollendick & White, 2013; Kerns et al.,
2014).
Strengths and Limitations of the Present Study
The large sample size spanning twelve studies from three countries allowed for
greater representativeness in terms of examining common anxiety profiles in ASD and
power to sample even the less common anxiety experiences that might have been missed
in some of the previous studies with much smaller sample sizes. The availability of
measures of functioning and autistic symptomatology for many, although not all,
participants enabled the exploration of possible associations between individual
characteristics and ASD-related anxieties. The detailed thematic analysis allowed a rich,
yet concise and structured, organization of themes and subthemes in both common and
ASD-related additional anxiety experiences.
Several limitations are also important to note. Firstly, the SCAS-P item 39 used in
this study is an optional additional item; thus, the lack of response by many of the
informants cannot, and should not, be regarded as an indication of the absence of other
common or ASD-related anxieties in these young people. Fatigue from completing the
SCAS-P and other measures in most of the pooled studies in the database could, for
example, lead to omitting or skipping the additional optional item. Secondly, due to the
archival nature of the dataset and survey methods adopted, it was not possible to further
clarify ambiguous or incomplete/single worded responses. However, consistent coding
was observed in these responses and conservative coding was adopted by coding the most
salient characteristics noted in caregivers’ written responses, avoiding over-interpretation
(e.g., fear of haircuts = tactile; discos = places6).
6 It is possible for example that a fear of discos is in fact sensory in nature (auditory), but it is not possible to be entirely confident that this is the case, as it could also be tactile or due to large crowds or for other reasons, i.e. uncertainty/ unpredictability/ visual sensory, therefore coding was more general in these
21
Furthermore, the brief written responses by the caregivers may not fully capture
the extent, intensity, and impact of the distress experienced in relation to the reported
fears/anxieties, nor do they specify if the anxiety is anticipatory or more reactive. It has
been suggested (Kerns et al., 2014; Mayes et al., 2013) that fears and anxieties often
reported as “unusual” by caregivers of young people with ASD are due to the “intensity,
obsessiveness, irrationality, or interference with functioning” rather than necessarily
idiosyncratic or atypical (Mayes et al., 2013; p. 153). Although respondents completed
this open-ended item following a 38-item anxiety-specific measure, it nevertheless
remains possible that their responses may capture not only fear-based experiences, but
also potentially challenging or avoidant behaviors. These behaviors may not be primarily
or entirely fear-originated, but may be more broadly upsetting or distressing. As the
method adopted did not involve a face-to-face interview, it was not possible to clarify and
expand on their responses to ensure they were anxiety-based only (see Kerns et al., 2017
for promising psychometric properties of an adapted addendum clinical interview aiming
to do just that and to disentangle anxiety from ASD experiences). Similarly, it was not
possible to disentangle, for example, anticipatory fear/worry towards sensory stimuli
from stressed reactions to such stimuli. However, we argue that the way the question was
phrased (“Is there anything else your child is really afraid of?”) does provide quite
specific and clear focus of the question to most likely guide fear-based responses.
Further, it remains possible that, had the question included the terms “worried about” or
“anxious about”, the informants may have evoked more or different responses as when
compared to the “afraid” terminology used in this item. At the same time, we note that
many responses (i.e. social, health-related anxieties) appear to be predominantly worry-
responses (i.e. in this case, specific “uncommon” phobias, places) to avoid making assumptions about the particular anxiety reported and its underlying nature.
22
related, suggesting that informants were not restricted by the term “afraid” to report
specific stimuli/fears only.
Possible Implications and Future Directions for Research and Practice
Our findings highlight two major limitations of instruments developed for the
general population, when used with youth with autism. Firstly, a significant number of
additional common childhood anxieties, which were often reported by caregivers of
youth with autism in this study, are not sampled by the SCAS-P, or by other common
general anxiety measures for typically developing children. Second, the present findings
further highlight the observation that current existing tools are insufficient in sampling
anxiety manifestations that are more relevant or specific to individuals with ASD; thus
recent efforts to develop and/or validate more ASD-informed tools (Rodgers et al., 2016;
Keen et al., 2017), or addendum scales (Kerns et al., 2014) are important and clinically
significant. Initial pilot tests and preliminary psychometrics analysis have showed
promising results for the ASC-ASD as a valid measure of anxiety amongst individuals
with ASD (Rodgers et al., 2016). Such work needs to be continued and strengthened by
revision of items, inclusion of additional items to tap on themes identified in the present
and other studies, and further validation research studies. Existing measures, such as the
SCAS-P, can be improved and revised by developing and piloting an addendum subscale
for young persons with ASD, which should include questions asking about the ASD-
related anxiety themes and subthemes identified here. Furthermore, although this study
included many cognitively impacted participants with ASD, future studies should include
well-characterized samples of young people with ASD and intellectual disabilities to
better characterize the presentation and experiences of anxiety in this group and,
importantly, to carefully distinguish it from challenging behaviors, general distressing
experiences and other complexities.
23
Clinically, assessment of anxiety in ASD should aim to include routine probes
and clarifications for both common and ASD-related anxieties using more comprehensive
measures and lines of questioning. The themes, subthemes and codes developed in this
study could provide a helpful clinical framework of types and groups of common and
more ASD-related anxieties for clinicians to specifically enquire about, so that important
indicators of anxiety are not missed.
Finally, existing interventions for anxious youth with ASD have often adapted
CBT anxiety interventions for individuals without ASD by including social skills or other
related components or making other content or delivery focused adaptations (Moree &
Davis III, 2010; see also Kerns et al., 2016 and Rodgers & Ofield, 2018). Future
interventions can benefit from developing and piloting conceptual frameworks to
specifically target not just common/ DSM, but also ASD-related anxieties. This will
likely require a more ASD-informed biopsychosocial assessment and formulation, and
different mechanisms/ processes to be targeted and systematically explored. For example,
worries relating to sensory sensitivities could be targeted through sensory desensitization,
improving sensory self-regulation and via environmental supports or modifications to
reduce or better manage sensory overload; anxiety relating to novelty and change could
be improved through gradual respectful exposure to change, surprise and novelty, as well
as via environmental adaptations respecting autistic individuals’ need for preparation,
planning, structure and transition support; and/ or through directly targeting rigidity and/
or intolerance of uncertainty via working to improve the use of a broader range of helpful
thinking and behavioral repertoires in autistic people’s anxiety management “toolboxes”
(see Rodgers et al., 2017; 2018; White, Simmons, Gotham et al., 2018).
White et al. (2018) and Rodgers & Ofield (2018) both argued for the importance
of identifying and investigating candidate mechanisms before evaluating clinical impact
24
in future intervention research in this area. White et al. (2018) proposed several candidate
mechanisms (cognitive, positive and negative valence, social processes and arousal
processes) to target and investigate in relation to anxiety and depression. We concur and
further recommend that these processes are targeted and examined differentially for their
mechanistic role in common/ DSM versus more ASD-related anxieties. For this to be
possible, future intervention studies will need to more clearly describe and assess,
identify, describe, develop, and evaluate mechanistic focused treatment targets not only
in relation to DSM/common, but also ASD-related anxieties.
25
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Table 1
Participant characteristics and statistics of the full pooled sample and this study’s subsample
Participant Characteristics Full international pooled sample
N = 870 unless otherwise indicated
This study’s subsample (respondents to SCAS-P item 39)
N = 287 unless otherwise indicated
Comparison Statistics
Age M = 11.58 years (SD = 2.77 years)
M = 11.12 years (SD = 2.65 years)
t(1155) = 2.46, p = .01 Cohen’s d = 0.17
Gender Male 763 (87.7) 250 (87.1) χ2 (1) = 0.07, p = .79
Φ = 0.008
Female 107 (12.3) 37 (12.9)
Diagnosis Autism/ASD 727 (83.7) 241 (84.0) χ2 (2) = .68, p =.71 Φ = 0.02 Asperger’s 111 (12.8) 33 (11.5)
PDD-NOS 32 (3.7) 13 (1.5)
Autism Severity Measure7
Harmonized pooled autism symptom
severity score
M = .41 (SD = .20) N=392*
M = .38 (SD = .19) N=137*
t(527) = 1.21, p = .23 Cohen’s d = .15
IQ or Adaptive functioning8
IQ scores M = 96.58 (SD = 20.36) Range = 13-144
M = 96.07 (SD = 19.70) Range = 40-125
t(371) = .18, p = .86 Cohen’s d = .03
*Actual sample sizes for each of the variables in this Table is indicated separately in the respective rows, as not all pooled studies/ participants had data for all measures. 7 Obtained from different measures in different studies including the Social Responsiveness Scale, the Developmental Behavior Checklist Autism Screening Algorithm score (DBC-ASA), and the Social Communication Questionnaire; see Measures; harmonized by dividing each participant’s total raw score by each scale’s maximum score (see Magiati et al., 2017) to derive raw scores with a 0–1 range (higher scores = more ASD symptoms); not all participants in all studies had ASD symptom severity measures. 8 Standardized IQ scores were obtained from different measures in different studies including the WISC; WPPSI; WIAT; Stanford-Binet; Vineland Adaptive Behavior Scales; not all participants had IQ or VABS standard scores available.
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COMMON/ASD-RELATED ANXIETY AND ASSOCIATIONS IN ASD
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N=312* N=61* t(360) = .47, p = .64
Cohen’s d = .05
t(66) = 3.07, p <.01 Cohen’s d = 0.28
Adaptive functioning SS scores
M = 58.82 (SD = 40.37) Range = 0–171
N=239*
M = 56.73 (SD = 39.40) Range = 0–147
N=123*
Overall “functioning”
classification mean ranking score (1-8)
M = 4.73 (SD = 2.20) Range = 1–8
N=551*
M = 4.1 (SD = 2.31) Range = 1–8
N=184*
Informants Mothers 651 (74.8) 241 (84.0) Fathers 77 (8.9) 28 (9.76) Both parents 8 (0.9) 1 (0.35) Grandparents 1 (0.1) 1 (0.35) Others 4 (0.5) 0 (0.0) Not reported 129 (14.8) 16 (5.57)
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Table 2
Other Common Childhood Fears and anxieties themes/ codes and subthemes/ codes of caregivers’ responses to SCAS-P item 39 with examples
Other Common Childhood Fears – Main Themes/ Codes
Sub-themes/ Sub-codes (if applicable)
Examples
Animals (not included in SCAS) Pigeons/birds, worms and snails, blue whales, large animals Social Social Evaluation (perception) Hurting other people’s feelings, letting people down, being
different, afraid of being looked at, when parents disapprove of behaviours
Negative Social Relationship/Experiences
Bullies, name calling, being picked on, confrontations, having no friends, falling out with friends, not being loved, not fitting in due to alienation by peers, being rejected
New/unfamiliar Social Situations Strangers, joining new groups of people, approaching and speaking to new people, interacting with other children
Performance/Achievement Being late*, not completing tasks on time*, not knowing how to perform given tasks, preparing for exams, making decisions about going places, moving on to secondary school, forgetting things for school, not feeling in control
Fear of Punishment Withdrawal of privileges, angry authoritative figures, caning, being scolded
Health-related Getting injections, germs, surgery, getting dirty, (sight of) blood, getting injured
Weather/Environment Thunder, lightning, storms, hurricane Danger Fireworks, fire, getting lost Fears relating to Media/News/Movies TV and films full of violence and gore, horror movies, news
Existential/Supernatural Death, space, world ending, war, zombies, future, monsters OCD-related Thinking certain things will make someone else die
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PTSD-related Relives journey to A&E involving car crash Other common fears or other ambiguous/ unclear anxieties
Fairground/run rides, mascots, no pocket money, things being stolen or lost
* These were coded as performance related social concerns, although it is possible they could be linked to rigidity relating to time/ schedules/ deadlines.
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Table 3
ASD-related Fears and anxieties themes/ codes and subthemes/ codes of caregivers’ responses to SCAS-P item 39 with examples
ASD-related Anxieties reported in SCAS-P 39
Sub-categories (if applicable)
Further subthemes (if applicable)
Examples
Sensory Auditory (loud) Loud and/ or high-pitched noises, hand/hair dryer, babies crying, carol singer
Auditory (others) Specific noises/sounds, sounds from water pipe Visual Bright lights, bright colours Tactile Being touched, water coming down through shower head,
swimming Olfactory Smells of eggs, garlic, tomato Others Peacock feathers
Specific ‘Uncommon’ Phobias (SUP)
Situations/Places Walking along a particular street, discos, shops, Hungary
Activities/Events Bowel movement, looking at the moon, school trips, Christmas People Men, street cleaners, small children Stimuli Mechanical objects Washing machines, fans, public automatic flushing toilets
Food Baked beans, ginger, green food, chocolate and chips Media/Movies Start of windows logo, media logo, advertisements on TV
Other Specific Objects
Balloons, drainage pipes, buttons, stickers
Novelty/ Uncertainty/Change
Surprises in films, new things at home, the unexpected, Changes to routines/plans
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Table 4
Additional Common Childhood Anxieties reported by caregivers in SCAS-P open-ended optional item 39 (N participants with at least one
reported common anxiety = 153; N responses = 220)
Main themes/ codes for Other common childhood fears/ worries/ anxieties
Subthemes/ codes (if applicable)
N responses (%)
Social Total Social 70/ 220 (31.8) Performance/Achievement 23/ 70 (32.9) Negative social
experiences/relationships 16/ 70 (22.9)
Fear of punishment 14/ 70 (20.0) Perceived social evaluation
by others 10/ 70 (14.3)
New/unfamiliar social situations 7/ 70 (10.0) Danger related 36/ 220 (16.4) Weather/ Environment 25/ 220 (11.4) Animals (not included in SCAS) 23/ 220 (10.5) Existential/ Supernatural 23/ 220 (10.5) Health-related 20/ 220 (9.1) Fears relating to Media/ News/ Movies 9/ 220 (4.1) OCD-related 2/ 220 (0.9) PTSD-related 1/ 220 (0.5) Others/ambiguous/unclear 11/ 220 (5.0) Total Other Common Childhood Fears 220 (100)
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Table 5 ASD-related anxieties reported by caregivers in SCAS-P additional open-ended item 39 (N participants with at least one reported ASD-related
anxiety = 133; N responses = 192)
Main themes/ codes for ASD-related anxieties reported
Subthemes/ subcodes
(if applicable)
Number of responses (%)
Sensory Total Sensory 107/ 192 (55.7) Auditory (loud) 65/ 107 (60.7) Auditory (others) 17/ 107 (15.9) Tactile 18/ 107 (16.8) Visual 3/ 107 (2.8) Olfactory 2/ 107 (1.9) Others 2/ 107 (1.9) Specific ‘Uncommon’ Phobias (SUP) Total SUP 56/ 192 (29.2) Stimuli 29/ 56 (51.8) Activities/Events 13/ 56 (23.2) Situations/Places 10/ 56 (17.9) People 4/ 56 (7.1) Novelty/Uncertainty/Change 29/ 192 (15.1) Total ASD-related Anxieties 192 (100)
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Table 6
Logistic regression of age, gender, OF and AS on predicting group membership of children with none versus at least one or more ASD-related
caregiver-reported anxieties (n = 270)
Variables aβ SE Wald test df p-value bOR (95% CI)
Constant .56 1.00 .32 1 .57 1.76
Age -.12 .07 2.80 1 .09 .89 (.78 – 1.02)
Gender .48 .60 .63 1 .43 1.61 (.50 – 5.21)
Autistic Symptomatology 2.77 1.19 5.44 1 .02 15.92 (1.56 – 162.88)
Overall Functioning -.12 .09 1.64 1 .20 .89 (.74 – 1.07)
a β values are the estimated unstandardized regression coefficients; b OR indicates likelihood of caregiver reporting at least one ASD-related anxie
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